Re: saying hi--now with a question...

[Guest guest]

I posted an intro a couple days ago (included below) and I'm guessing

(hoping) the list is just very quiet right now and that I didn't say

anything inappropriate or rude because I'm really kind of desperate to find

a little support or insight.

I do have a very specific question right now, though. We homeschool and

belong to a very small group of only about six or seven active families. One

of the moms is planning a " not-going-back-to-school " day that started as a

camping trip and is now probably just going to be a day at a nearby

lake/beach followed by a campfire. The campfire is part of the park's

scheduled activities and is open to the general public because it is a state

facility. It's a fairly popular resort area and will probably be pretty

crowded since it will be one of the last weekends of the season.

We aren't going to Children's Hospital until September 4, so we won't have a

diagnosis or any additional info or tests until several weeks later. Is this

something you would do with your child? Or, is it too much of a risk for

now?

Thanks!

Missy

*******

> Hi everyone!

>

> I stumbled on this group when I was looking for info, and was so glad

> to find it.

>

> We have three kids--a daughter (12) and two boys (ages 7 and 5); our

> youngest is Sterling and was dxed as an infant with severe multiple

> food allergies and has always had gastro issues (malabsorption,

> damaged tummy, gastritis...).

>

> His IgM has always been a little low, and his IgG, until recently,

> never hit 300. But, except for a mild ear infection when he was 9

> months old and a nasty episode including hospitalization with what

> they believe to have been Fifths Disease (no resulting antibodies),

> he's never really been sick beyond allergic reactions.

>

> Since this past May, he's been sick with one virus after another, so

> we did the blood work again (first time in two years). His IgE was

> elevated (434), IgA--normal, IgM--slightly low as always, IgG--443.

> IgG2 and 3 were within normal limits; IgG1 is 317, I think.

>

> He reacted to his 2-month vaxes and completely stopped growing for

> five months, so we have not vaxed since. He shows no remaining

> antibodies to those last vaxes (and that's probably normal); he also

> has had three endoscopies, all showing damage or irritation and has

> been on a Prilosec compound occasionally for periodic silent reflux

> caused by exposure to allergens.

>

> Last week, the gastro sent us to get an x-ray of his intestines

> because he regularly has tummy aches and has to take breaks during

> meals to rest. He had stool retained on both sides of his intestines,

> even though he does poop daily (massive amounts) and eats appr. two

> adult-sized servings of oatmeal almost every day and drinks plenty of

> water...no idea if that has anything to do with his immune system,

> but it all seems to cycle back together so I thought I'd toss it out

> there.

>

> He has a huge appetite, and has settled into a nice little curve of

> his own just below the growth chart. He's fairly active, has a high

> tolerance for pain, but since May has tired much more easily...

>

> I think that's all. Please let me know your impressions; we have an

> appt with an immunologist at Children's Hospital in DC on Sept. 4. We

> saw an immunologist at Hopkins a couple years ago, but he treated my

> son like a lab rat--never even speaking directly to him and I just

> can't do that to Sterling.

>

> Thanks so much!

>

> Missy

>

>

>

> This forum is open to parents and caregivers of children diagnosed with a

> Primary Immune Deficiency. Opinions or medical advice stated here are the

> sole responsibility of the poster and should not be taken as professional

> advice.

>

> To unsubscribe -unsubscribegroups (DOT)

> To search group archives go to:

> /messages

>

[Guest guest]

It's an open environment which means a steady stream of air moving things

around. Watch out for anyone who has a sneezing, coughing fit going on (adult

or kid) and keep a distance. But really I would do that for myself or my

non-PID kid. Sounds like a fun time. We'd have more concerns about the

campfire affecting our asthmatic child than anything catchy.

Everyone's probably working on getting their kids either back into school or

ready for school. The list stays pretty active usually.

We had Macey's 504 meeting Wednesday and things went very well. We also

instigated a Health action plan which covers accomodations she'll need. THe 504

is mainly for testing accomodations she needs.

Anyway, welcome to the group.

Ursula - mom to (14) and Macey (12, CVID)

http://www.primaryimmune.org

http://www.jmfworld.org

http://caringbridge.org/ga/macey/

[Guest guest]

I don't restrict activities like you described. The biggest concern I would

have is the cleanliness of the beach water.

-

" M. Ridge- " <vcarter98@...> wrote:

I posted an intro a couple days ago (included below) and I'm guessing

(hoping) the list is just very quiet right now and that I didn't say

anything inappropriate or rude because I'm really kind of desperate to find

a little support or insight.

I do have a very specific question right now, though. We homeschool and

belong to a very small group of only about six or seven active families. One

of the moms is planning a " not-going-back-to-school " day that started as a

camping trip and is now probably just going to be a day at a nearby

lake/beach followed by a campfire. The campfire is part of the park's

scheduled activities and is open to the general public because it is a state

facility. It's a fairly popular resort area and will probably be pretty

crowded since it will be one of the last weekends of the season.

We aren't going to Children's Hospital until September 4, so we won't have a

diagnosis or any additional info or tests until several weeks later. Is this

something you would do with your child? Or, is it too much of a risk for

now?

Thanks!

Missy

*******

> Hi everyone!

>

> I stumbled on this group when I was looking for info, and was so glad

> to find it.

>

> We have three kids--a daughter (12) and two boys (ages 7 and 5); our

> youngest is Sterling and was dxed as an infant with severe multiple

> food allergies and has always had gastro issues (malabsorption,

> damaged tummy, gastritis...).

>

> His IgM has always been a little low, and his IgG, until recently,

> never hit 300. But, except for a mild ear infection when he was 9

> months old and a nasty episode including hospitalization with what

> they believe to have been Fifths Disease (no resulting antibodies),

> he's never really been sick beyond allergic reactions.

>

> Since this past May, he's been sick with one virus after another, so

> we did the blood work again (first time in two years). His IgE was

> elevated (434), IgA--normal, IgM--slightly low as always, IgG--443.

> IgG2 and 3 were within normal limits; IgG1 is 317, I think.

>

> He reacted to his 2-month vaxes and completely stopped growing for

> five months, so we have not vaxed since. He shows no remaining

> antibodies to those last vaxes (and that's probably normal); he also

> has had three endoscopies, all showing damage or irritation and has

> been on a Prilosec compound occasionally for periodic silent reflux

> caused by exposure to allergens.

>

> Last week, the gastro sent us to get an x-ray of his intestines

> because he regularly has tummy aches and has to take breaks during

> meals to rest. He had stool retained on both sides of his intestines,

> even though he does poop daily (massive amounts) and eats appr. two

> adult-sized servings of oatmeal almost every day and drinks plenty of

> water...no idea if that has anything to do with his immune system,

> but it all seems to cycle back together so I thought I'd toss it out

> there.

>

> He has a huge appetite, and has settled into a nice little curve of

> his own just below the growth chart. He's fairly active, has a high

> tolerance for pain, but since May has tired much more easily...

>

> I think that's all. Please let me know your impressions; we have an

> appt with an immunologist at Children's Hospital in DC on Sept. 4. We

> saw an immunologist at Hopkins a couple years ago, but he treated my

> son like a lab rat--never even speaking directly to him and I just

> can't do that to Sterling.

>

> Thanks so much!

>

> Missy

>

>

>

> This forum is open to parents and caregivers of children diagnosed with a

> Primary Immune Deficiency. Opinions or medical advice stated here are the

> sole responsibility of the poster and should not be taken as professional

> advice.

>

> To unsubscribe -unsubscribegroups (DOT)

> To search group archives go to:

> /messages

>

[Guest guest]

Thanks so much for the responses! I think my husband and I are a little

paranoid right now. Like I said in my intro, we're not used to him actually

getting sick and it just seems that, since mid-May, it's been one thing

after another.

Missy

[Guest guest]

from Dale, Mom to Katy, CVID, grown and married

Missy, Welcome to the group. You asked for our impressions and here's

mine. I think you are going to need this group! Looks like you've got

a little boy with a PID -- possibly CVID. You are entering the stage

called " testing " and there's two reasons it's called testing. #1 they

are testing to make sure exactly what is happening to the immune system

and #2 it is the most " testing " trying, stressful time of the process!

It will stress your nerves and heart to go through this period of

waiting. But with God's help, you'll make it and get a diagnosis, a

treatment plan and then move into the that wonderful stage of adjusting

and coping and dealing with it.

Since IgM is a precursor to IgG and IgA -- when that's low enough to

cause either the IgG or the IgA to also be low -- then it generally

turns out to be diagnosed as CVID which is Common Variable Immune

Deficiency. It's so vitally important to get all the testing done now

so that you know the complete story before you start treatment. They

will be checking to make sure that that's the only problem and that it's

not complicated with other deficiencies.

So, I recommend that you go ahead and order the Patient and Family

Handbook from the Immune Deficiency Foundation (IDF) by calling

1-800-296-4433. It's free to you.

The next thing you need to know is that you will go through a period of

being absolutely germ-phobic. Actually, that's good for you to become

aware -- but it's also bad because we don't want our kids to become

" sickies! " So, it's a constant juggling act.

Every PID kid has his/her own identity. Some are really susceptible to

sudden, very serious infections -- others just do one virus after

another while others are okay as long as they don't get exposed to

strep. That's where the VARIABLE part comes in.

On this list we have some Moms who've discovered that if they allow

their child to climb on the indoor playground at the fast food

restaurants - it's an automatic trip to the hospital, others handle it

fine as long as they are not already sick with something -- and others

consider it worth it once in a while. Katy couldn't get into lake

water AT ALL without getting terrible fungus and skin infections. Yet,

as a high schooler, she still chose to go on the church youth water ski

trip -- she said that once a year was worth it. We would schedule to

see the dermatologist immediately afterward because we knew she would

bring something nasty home.

Of course you'll be teaching him not to drink or eat after other kids,

you'll have to wrestle with him about not sharing water bottles, etc.

when he tries out for sports. But by that time you and he will know the

consequences -- sick for a few days, sick for several weeks, or out for

the season -- and you and he will learn what's worth the risk and what's

not.

The reason the camping trip doesn't sound bad to most of us is that it's

outdoors. Most of the germs that people pass around happen in crowded

indoor spaces like indoor play equipment, doctor's waiting rooms,

playgroups, church nurseries, day care, etc.

My daughter was never hospitalized -- she just piggy-backed viruses and

ear infections and sinus infections and toe-nail infections and eye

infections and skin infections, etc. ad infinitim, then repeated again.

Before she started IgG replacement, we were trying to limit her exposure

to germs as much as possible because her body was just wearing out. But

after starting IVIG, she decided she would rather be sick occasionally

than to be treated like she was " sick " all the time. So, we let her

live normally. She got back into very normal routines and did normal

things. She was active in theatre and cardio kick-boxing. She had been

a gymnast before getting sick but had lost too much ground to get back

with her team, so chose not to return. She went to college. Is

married and working 2 jobs right now.

I tell you that to encourage you -- this is a VERY SERIOUS condition,

but it's also something that you and your family can manage with God's

help.

Oh, and I chose to home-school my two children long before Katy became

ill. It was such a blessing during her time of illness because I could

flex her assignments depending on her health. Otherwise she would be

really, really behind her peers. So, best wishes for your non-school

school year!

In His service,

dale

M. Ridge- wrote:

>

>

> I posted an intro a couple days ago (included below) and I'm guessing

> (hoping) the list is just very quiet right now and that I didn't say

> anything inappropriate or rude because I'm really kind of desperate to find

> a little support or insight.

>

> I do have a very specific question right now, though. We homeschool and

> belong to a very small group of only about six or seven active families.

> One

> of the moms is planning a " not-going-back-to-school " day that started as a

> camping trip and is now probably just going to be a day at a nearby

> lake/beach followed by a campfire. The campfire is part of the park's

> scheduled activities and is open to the general public because it is a

> state

> facility. It's a fairly popular resort area and will probably be pretty

> crowded since it will be one of the last weekends of the season.

>

> We aren't going to Children's Hospital until September 4, so we won't

> have a

> diagnosis or any additional info or tests until several weeks later. Is

> this

> something you would do with your child? Or, is it too much of a risk for

> now?

>

> Thanks!

> Missy

>

> *******

>

> > Hi everyone!

> >

> > I stumbled on this group when I was looking for info, and was so glad

> > to find it.

> >

> > We have three kids--a daughter (12) and two boys (ages 7 and 5); our

> > youngest is Sterling and was dxed as an infant with severe multiple

> > food allergies and has always had gastro issues (malabsorption,

> > damaged tummy, gastritis...).

> >

> > His IgM has always been a little low, and his IgG, until recently,

> > never hit 300. But, except for a mild ear infection when he was 9

> > months old and a nasty episode including hospitalization with what

> > they believe to have been Fifths Disease (no resulting antibodies),

> > he's never really been sick beyond allergic reactions.

> >

> > Since this past May, he's been sick with one virus after another, so

> > we did the blood work again (first time in two years). His IgE was

> > elevated (434), IgA--normal, IgM--slightly low as always, IgG--443.

> > IgG2 and 3 were within normal limits; IgG1 is 317, I think.

> >

> > He reacted to his 2-month vaxes and completely stopped growing for

> > five months, so we have not vaxed since. He shows no remaining

> > antibodies to those last vaxes (and that's probably normal); he also

> > has had three endoscopies, all showing damage or irritation and has

> > been on a Prilosec compound occasionally for periodic silent reflux

> > caused by exposure to allergens.

> >

> > Last week, the gastro sent us to get an x-ray of his intestines

> > because he regularly has tummy aches and has to take breaks during

> > meals to rest. He had stool retained on both sides of his intestines,

> > even though he does poop daily (massive amounts) and eats appr. two

> >

[Guest guest]

Dale,

Thanks so much for your response. We went through a period when Sterling was

a baby and first being dxed with the food allergies that was overwhelming

and we mostly hid from the rest of world while we processed what was

happening. He's ana on contact to dairy and has several other anaphylactic

allergies, so we had to figure out our comfort zone while still giving him

space to live. I just feel a little like we've gone back to that point, but

with even fewer answers and resources.

He's a tough little kid, though, and he won't let us shut him away from his

friends for long. Plus, my 7-year-old son is ultra-active and pulls him into

his games and projects, and there are plenty of times I have to just put

everyone in the van and go because otherwise we'll drive each other bonkers.

Since May, we've stayed closer to home because it seems like every time

we've done something, he'd get sick again.

Many of our activities are outdoors anyway. We can't do the indoor

playgrounds at fast food places or places like Chuck E. Cheese because of

the food allergies, so maybe we've avoided a lot of the exposure that other

families have had. It's good to know that outdoor activities are safer; that

helps me to put things in perspective and to plan.

Thanks again for your welcome.

Missy

http://lifewithoutschool.typepad.com/